Hello All,
I clearly remember reading a post about a recent study (by possibly the Mayo or the Lahey Clinic?), concerning the average duration of PMR which I believe was 5 1/2 years. I’ve looked and searched this site but can’t seem to find the reference…could someone point me to it? I’m so tired of my doctor being shocked that I’m still on prednisone over 2 years after diagnosis😩…would like to print the article and take it with me to my next appointment.
Thanks so much!
Not sure if this is what you mean….
academic.oup.com/rheumap/ar...
No - that's the Muller one from Keele.
This is an updated article about the Matteson article:
practicalpainmanagement.com...
and this is the link to the original paper:
pubmed.ncbi.nlm.nih.gov/287...
Cheers - knew you’d be along…have copy of the original M article…
Blooming links have been changed - had to find it!!!!
That’s why I couldn’t find it ..:.clever you😊
I love statistics, what I don’t like is how some bend them to their needs. I also like that this paper shows the ranges at the 95% confidence interval. Obviously those ranges would be much larger at the 99% confidence interval (+/- 3 sigma). Anyway, I hope those that read the paper takes note of the range 3.37 years to 8.88 years. Shove that in your doctor’s face.
PS: The paper is a bit remiss indicating the average time to reach 5 mg/d for 6 months was 1.44 years. Based on what starting dose? I’ve read 15 mg in a paper and also 25-30 mg. Without the start dose included that bit of info is meaningless.
All research teams I know, know that the secret to getting the answer you want is that your stats advisor tells you the right question to ask! Used to infuriate me when I was translating market research stuff!!!!!
This also mentions itpracticalpainmanagement.com...
Thank you so much ladies! That’s exactly what I was looking for😀
Sorry to say it is 6 years for me now, diagnosed at 53, and I still can’t get below 5 mg of Pred. 🤷🏻♀️ I hope your doc listens! X
He can always call me ! I’m now over 5 years and getting no better
hi it's been 10 years for me i was diagnosed when i was 46 im on 4.5 and not to bad at the mo 😊
The question I have about this article is that it studied “continuous GCS therapy”. We know there are many physicians who put their patients on aggressive weans then ignore symptoms and push them to get to zero. A key data point for me would be to include incidence of relapse. Which might be more difficult to study if the patient took themselves off to a different doctor because the first round didn’t work. We hear of many patients who join this forum because the 2 year plan did not work and the beast is back.
"The median is the value in the middle of a data set, meaning that 50% of data points have a value smaller or equal to the median and 50% of data points have a value higher or equal to the median."
The reason the Mayo does that work is that it has Olmsted County in its catchment area - a very high proportion of Swedish heritage in the population. The patients weren't only from their clinics.
Dr Mackie also has a study they did at Leeds and the average (median and mode) was way over 2 years and something like 20% of people still had PMR after 5 years. I don't have a link to the research but she often shows it on slide shows.
Like my statistics professor was fond of saying, “You think your data says what?” LOL The hardest part of it all is properly designing the study. Otherwise garbage in and garbage out…
She is a Professor and works with some very clever people so knows what she's doing. Are you dissing her work without even reading it? The main part of what they did was look at patient records so can't see where they could have gone far wrong
Re-read what I posted. I didn’t say anything specific to the work. I quoted what my statistics professor would routinely state and it’s 100 percent correct.
But you directly replied to my post without acknowledging what I said and implying cynicism that these stats have been manipulated, as many are, so I'm curious to know what point you want to make on this discusssion which was originally about how long people have PMR for? It was a long time ago now, but I also studied stats as part of my Economics degree and career, so am familiar with the basics and how they can be misused. I've also read 'Bad Science' and other tomes. One of my Professors once said to take a bomb on to an airplane if you want to be safe because the odds of there being two on board was less likely than there being one.
Acknowledge what, that there’s a paper that shows a significant number of people have PMR for longer than 2 years and 20% still longer than 5? Ok, I acknowledge that you have found a another paper that supports my past and current belief that an earlier paper that stated for the majority of people PMR runs its course in 2 years was not representative of everyones’ experience.😂
My whole point is statistics is nothing more but taking a “subset” of a population and attempting to predict or attribute those findings, based upon that subset, and stating what the likelihood of those findings being applicable to the whole population.
Let’s assume it’s published that 80% of people in a study of 20,000 was rid of PMR in 2 yrs. That means 20% or 4,000 it was >2 yrs.
Let assume, to keep it simple, that the 2:1 woman to men ratio having PMR is irrelevant to how long it lasts (big assumption).
If the ratio of 50 per 100,000 people have PMR is close and that there are 8 billion in the world that’s 4 million with PMR. So, 0.8 x 4M = 3.2M PMR sufferers will be free of PMR in 2 yrs leaving 800,000 that won’t be. I wonder what the fraction of PMR sufferers are on PMRGCA/UK group.
Do you see where I’m going with this? No one knows what group they’re in until after they are free of PMR. Also what does free of PMR mean? Does it include dealing with aftermath Adrenal deficiency issues?
All rhetorical questions.
Treat for the symptoms of the darn disease and stop fretting about how long it’s going to last, have no control over that!
"No one knows what group they’re in until after they are free of PMR"
Quite - but the studies have been done with anonymised data from medical records - both of them as far as I know. There is always something missing and you can't go back and check with that sort of data acquisition so maybe they relapsed but you can't find out.
"Treat for the symptoms of the darn disease and stop fretting about how long it’s going to last, have no control over that"
Again - quite - BUT knowing a lot of patients have it longer than 2 years is important to convince the adherents to the 2 year myth as Sarah Mackie puts it. Because they will pull steroids, switch to another drug that doesn't work or even tell patients it is all in their head. Especially because a lot of patients are older and female.
It’s the doctors I’m mainly referring to as to stop fretting about length of term. If they all focused on treating the disease that would remove a great deal of patient stress knowing if they needed to raise the dose temporarily they had their doctor’s support. In the back of my mind I was always trying to build up a small pred inventory in case my Rheumy decided to really cause me grief.
That is my point - they aren't always aware or convinced
It's us patients who are chipping away and educating the ones who are willing to listen and learn, and as you say, 'treat what's actually in front of them rather than what they read in the books'
We've all learned to stash for a rainy day 
As all the medical textbooks say PMR lasts 2 years and burns itself out it is useful to have a bit more factual information, as that incorrect attitude hinders treatment. For example, many people, self included, were/are wrongly told that 'You can't possibly still have PMR after X years'. PMR has been neglected and poorly researched but thanks to some great rheumatologists we are finally beginning to make inroads into understanding it. I think Eric Matteson has retired now but I'm sure he'd love to hear your feedback on his study
😊
I think both the studies were done with figures extracted from medical insurance records in the US and GP records in the UK. It does say somewhere.
I’ve been told by two different doctors (my wife’s respiratory doctor and a friend who is a retired knee surgeon) that Prednisone is still effective after 2 years past its expiration especially if stored in a cool dark place. I keep mine in a cupboard with desiccant). My understanding is it doesn’t go toxic but may lose some of its effectiveness which is fine by me. I make my dose as needed to eliminate pain so don’t care if it’s at 90 percent effectiveness.
That’s inline where I hope to be at 39 months. My Rheumy made an exasperated comment that at my pace I’d be 3.5 years! I said it is what it will be.🤷🏼♂️
Already spoken with my GP and if he had become an a** she was fine with my approach. But now won’t see him until early September and hope to be at zero.
Got a Cold and has to pospone latest appointment.
Morning all, I know that many find statistics interesting and I'm sure that they have their place. Also many groups/people seem to have no problem in interpreting them in the way that suits them best (not pointing fingers at anyone here).
Personally, for me as a patient they are pretty meaningless. I accept that I have a long term term systemic illness, which at the moment is only treatable with Pred.
It doesn't really matter to me whether it last two years or twenty two years, it is what it is and it will/may burn itself out, go into remission, when it's ready. I also accept that it will/may affect the way in which I can live and the things that I'm able to do, whether that's because my body won't physically be able to do the things I used to do or I need to change the way I live and/or eat to mitigate as many of the problems that do/can appear because of long term Pred use.
Doctors need to treat the illness and the person, and make clear to their patients that there is No time frame, could be anywhere from 12 months to five, six, seven years with in reality, no end time. sadly it appears that some/many? seem to find that difficult and that is what needs/has to be changed.
Some patients will be in remission in one year, some in two and some in three etc etc. Some, maybe a very few, never.
The time scale is/should be irrelevant, they are treating the person and the illness not just applying, word for word, the contents of a piece of paper which cannot possibly apply to every person on the planet. It's a possible guideline!!!
Even with my relatively easy journey at my present tapering rate it will be around another ten months before I'm off Pred, which will put me into three and a bit years. The date is not in my diary it might happen it might not, if it does great, if it doesn't then no problem.
Have a great day everyone, raining here again, the third morning in succession of a wet walk with the beasties - where has the sun gone???
thanks for the perspective that the studies show PMR can go for longer than two years, my doc stopped prescribing Pred at 24 months even though the symptoms of pain, stiffness, and fatigue continue somewhat diminished. Doc didnt want side effects of cataracts and dermatological disorders and bone thinning, Id prefer the prednisone to the PMR symptoms even with the side effects.
What an idiot! NO disease comes with a fixed term - and PMR and the effects on mobility are risk factors for weight gain, reduced bone density, depression and falls. I know, I had 5 years of PMR without pred as it wasn't diagnosed. Cataracts are the least of anyone's problems - they happen anyway and are easy to deal with.
Doc didnt want side effects of cataracts and dermatological disorders and bone thinning,
But he didn’t havre PMR did he! Ditto to PMRpro’s comments!
It seems that in the US the apprehensiveness of being accused of malpractice from patients who develop side effect complications after being on Pred for a long time is more of a driving force for treatment decisions than patient quality of life , has resulted in sending several of my acquaintances to Mexico to get pred and to not have blood work labs done to avoid their doc's scrutiny and possible refusal to treat. Maybe the aging of our physician cadre will change some of this as they develop these debilitating conditions. no need to reply, just nice to hear congruency in others experiences.
I was just thinking - having had PMR would seem to be a qualification for feeling able to refuse pred! I haven't yet had a pred effect that makes me regret 13+ years on it - but then, I'd had 5 years NOT on it. Without pred I'm pretty sure I'd not be here now. The pain I've had the last year has been bad enough and it hasn't been constant.
The 5.9 Years Average Duration
Duration of PMR and Prednisone’s role
In the aftermath of PMR
Average dose 18months into PMR/GCA
duration of PMR and steroids
